Losing my dad.

[acovertdh87]

This is a fairly long story, but I need to tell it. It has been 3 months since my dad passed away and it seems like my grief is only getting worse. 

 

When my dad was 22 years old, he had a heart transplant. He needed the transplant because he contracted a virus that destroyed his heart. I was not born until he was 27. I have grown up knowing that my life almost didn't happen, along with my little sister's. It was hard to understand and then it caused me a lot of inner turmoil as I got older. Dad was mostly okay, despite having some complications from the medicines he had to take. He ended up having both of his hip joint's replaced over the years, one of them had to be replaced twice. It wasn't until I was 19 years old that dad started getting sick again. 

 

In April of 2007, my dad had a stroke. Luckily, my cousin was there when it happened and was able to call an ambulance and get him to the hospital. I remember every detail of that morning. I remember my sister calling me. I remember getting in my car and, no exaggeration, driving over 100 mph from my house to theirs, trying desperately to get there before the ambulance left. I was only about 3 minutes too late. We rode with my older sister and several others to the hospital where they took him, and waited to be allowed in to see him. After a while, we went back to his ER room. I tried to keep it together, but seeing him like that shook me. The worst part was that he apologized for upsetting us. All he ever cared about was making sure we were okay. After the stroke, dad stayed in the hospital for a long time. It wasn't a "bad" stroke and he eventually gained back most of his function. However, they discovered the reason for his stroke was a cardiac arrhythmia. The doctors put him on a beta-blocker in hopes of correcting the issues, but this landed him right back in the ER, very very close to death. In the end, he had to have a pace maker and defibrillator placed in his chest to prevent the arrhythmia from causing any more problems. It all went down hill from there. 

 

About every year after this, dad would start feeling sick and have to go in the have stents placed in his arteries to prevent heart attacks. Since dad had a transplanted heart, heart attacks didn't feel the same to him or have the same effects as with other people. He had several, but survived them all. This was when they started talking about the transplant list. It was a long process, but he was finally placed on the list on September 13th, 2013. I lived on edge for a long time, wondering when we would get the call. Lets rewind back about a year, in August 2012, I moved 4 hours away from home to go to school. So you can imagine, it was very difficult for me to cope. It was even harder because listed patients are not supposed to travel very far from their hospital and 4 hours was too far. So my parents never visited me at school. Not once. 

 

On March 12th, 2015 at 10:21 pm, I received a text from my dad that just said "new heart!!!!!!" I immediately went into shock. I didn't know what to do or how to react. I was right in the middle of my second semester in a professional program and had no idea what would happen if I missed some school to go be with my dad. When my boyfriend got home not to much later, I told him I was getting in my car and driving to be with my dad. I emailed my teachers and hoped they would be okay with me missing a couple of days, and they were. I drove through and got to the hospital before 4 am on March 13th. I was able to see my dad about an hour later, while he was signing the paperwork and consent forms for his surgery. He started making his way to surgery around 5:30 am and went under at 8 am. The rest of the day for me is a huge blur. At some point I picked my little sister up from the airport, and I vaguely remember going to the house to take a short nap. Sometime after 5 or 6 pm, not sure exactly when, we were allowed into his ICU room. Dad was in a medically induced coma, he was on an "ECMO" machine, and he was not well. The right side of the new heart was not working right. He was intubated and on a ventilator. 

 

The next several weeks were spent with our hopes being lifted and crushed over and over. What originally was only going to be 24-48 hours of sedation ended up being over 10 days. When they finally took him off of sedation, we discovered he had several major strokes on both sides of his brain. This is where it all fell apart. The hospital, in my opinion, did not take the proper measures to monitor him for strokes, despite his high risk from being on ECMO. They put him through countless procedures. They gave him so many infections. They acted like everything was going to be okay. 

 

After about a month of being in ICU, they moved dad to another, less serious ICU. We thought, "Yes, things are going fine." He started going for walks, he started talking, and he started to be more like himself. That's when he started complaining about his stomach pain. The doctors wouldn't even listen to him. They assumed that because he had stomach issues before, that was what it was. He also had hiccups all the time. A couple weeks later, they sent him to rehab. The last step before coming home. I was lucky enough to be there the day he was sent to rehab. It felt like things were finally looking up. I spent one day with him looking at houses for myself and for my parents for when he was better and for when I came home for good. He was in rehab for less than a week before he was sent back to the hospital. Several days later, I received the worst set of calls and text messages of my life. My mom wanted to talk to me but only if my boyfriend was home. Dad's liver was failing. The next day, it was just infected and not failing. Then the next day my sister called to let us know that dad was not going to get better. He wanted to go home for his last few weeks. This happened to coincide with my first day back to school for the summer semester. Again, I started to panic, for obvious reasons, but also because I didn't know if I would be able to leave school for the time I needed and come back without having to repeat the last year. After emailing my teachers through the night, I got the response I had hoped for; go, be with your dad, you can pick up where you left off when you get back. I was back home the next day. Dad was still in the hospital. They had to get things set up with insurance for home care and a bed and all of that. It was a mess, just like the rest of our experience with this hospital. There are so many details I am leaving out just because this is getting so long. We got dad home a few days later. We had to learn how to take care of him and administer his IV antibiotics and antifungals, which were basically keeping him alive. 

 

My younger sister and her fiance drove in from half way across the country, and we had started planning a double wedding. Both of my sisters were engaged at this time, and both had already started planning their weddings, but neither wanted to wait. They wanted dad to be there. So we had a massive double wedding/celebration of my dad's life in the front yard of our home. There were at least 150 people there, probably more. It was so beautiful and special. My dad had one of his last good days that day. He got to say goodbye to a lot of family and friends. This was about 4 days after he got home. The next few weeks were just a downward slope. He started out being able to talk and drive around his motorized chair, but after about 2 weeks he was delusional and couldn't do much. He was incontinent and my mom was taking care of him. Like I said before, the antibiotics and antifungals were keeping him alive. Finally, my mom made the decision to start hospice and stop the medications. It only took 3 days for him to go. My sisters, my mom, my two aunts, my new brother in law, and my cousin were all by my dad's side, holding him, while he passed. I will never forget seeing the life leave him. It was both beautiful and terrifying. I still can't tell how much it has damaged me. Sometimes when I close my eyes, I think of that moment and it tears a hole in me. 

 

Since my dad passed away, I completed my summer school work in 1 month and kept on track. I had a 3 week break before fall semester. My mom visited me at school for the first time since I moved. And so much more. For the first month, I felt okay. I was so sad and I cried a lot, but I felt like I was coping really well. During my 3 week break, I got really depressed. I think that not having much to do gave me too much time to think. I have been back in school for a month and it will be 3 months since his passing on the 30th. Most days, I don't even want to get out of bed. I feel horrible all the time, like physically ill. I have dreams about my dad being alive all the time, like he just came back from being away for a while. It always screws me up because in the dreams, he is never himself, he is always as he was before he died. I don't want to remember him that way. He was so frail and thin and had aged about 10 years in only 3 short months. I hate remembering him like that. And I am angry! I am so angry with the hospital for how they handled my dad's case. There were way too many doctors who were NOT communicating with one another and contradicting each other! I believe from the bottom of my heart that the hospital killed my dad. I know that sounds harsh, but if you heard all the details, you'd probably agree. The other thing that really pisses me off is that if he hadn't had the transplant or been put on the list, he might still be alive today. He was getting by just fine, and it sure as hell would have been better for him to pass quickly that the horrifying way he went. It was so slow and there was so much pain. I feel so sad for how he went. 

 

Now that I have told my story, can someone please help me feel better? I don't have many friends at school, well none really, and my fiance has never lost a parent so he doesn't really understand. He listens, but sometimes it isn't enough. I know I should be in grief counseling or something but I can't bring myself to do it. Someone help. Please. I can't keep living my life in this horrible state of grief and depression. I need to live again and be happy. 

[Lisa k]

Hi acovertdh87, first of all i am sorry for your loss. I'm not sure i have anything helpful to tell you. Are you close to your family?. Can you talk to them about how your feeling. I can relate to you feeling depressed and sad as can most people here . I myself am terribly depressed and i have been seeing a phsycologist for two years about my anxiety and agoraphobia and depression and that was before my mum was even ill. My mum died july 14 2015 so only recent but from the moment i found out she had cancer and it was terminal my life has been on a downward spiral.All the months of watching her suffer and being reduced to just bones has killed me. I'm only a shadow of my former self and i've lost so much weight. I can say it is very difficult sitting in front of a stranger talking about how you feel. You can give it a go and maybe it may help. Just know you are not alone in feeling this horrendous grief . Come here as often as needed . I wander around here daily and although i don't always post i know others are feeling the same. Mostly i feel i have nothing much of value to share to make anyone feel better. Maybe just telling your family that you are feeling this way might help. Maybe they are feeling the same as you but don't want to be the first to say they are struggling. Have you mentioned to your fiance you are feeling depressed?.I don't have any friends either to talk to just this site.Since my mum died i feel nothing but alone although i have a brother 3 yrs older than me we are not close never have been. My arsehole father walked out when i was nine months old and came crawling back when i was 26 and i'n now 41. He promised this time he would not turn his back on us again but he did only 2 yrs later. He has no idea my mum is dead and as far as i'm concerned he f..k off forever. I only wish it was him dead not my mum . This grief journey sure does suck but we are all in this together so maybe that make you feel less alone. I hope sincerely you can have the strength to get through this.

Thinking of you

Lisak.

[acovertdh87]

LisaK, 

 

You lost your mom 2 weeks after I lost my dad. I know how you feel about knowing they were sick and then watching them wither away, it was horrible. I think that is what gets me the most. Like, he didn't need to suffer just so that we could have those "extra" months. Honestly, I really feel like the last time I saw my dad was the night he signed the papers for his new heart. I hugged him and told him it would be okay. I wish I hadn't said that. My fiance knows how I feel, he just doesn't have a lot to say. He is very supportive, but words just aren't his thing. I tell my younger sister about how I feel sometimes, but she is really far away so we mostly talk via text message. She doesn't really like to talk about it. I have never been very close with my older sister, I have been trying to get closer with her but she becomes very defensive when I talk to her about anything really. She had a miscarriage a few weeks ago and I have been trying to encourage her that it was normal to lose her first pregnancy, and she seems okay, but she won't talk about it. My mom isn't doing great. She seems fine too, but I know she is not. She is living alone now with the dogs, and she has started spending a little carelessly. At first it seemed like she was just treating herself because she never used to. Dad had been disable since I was young and didn't work, so he would truthfully spend a lot of the extra cash on his many, beautiful hobbies. My mom let him do what he wanted because we all knew his time would be cut short. Anyway, what I am trying to get at here is that my family is pretty broken too, and they have never been the sharing type. We all sort of bottle up our feelings. Which is why I came here. When I feel a little more comfortable, I will start looking around the site for more advice. Thanks for replying, I am so sorry we are both going through this. The hardest part for me is still to come; graduating college without him, buying a house or a new car without him (he always helped me with that sort of stuff and had the best advice), getting married without him (my fiance and I were not ready when my sisters had their double wedding), and having babies without him...it is all going to be so painful even though they will be the happiest moments of my life. I feel like it will rip me apart. Anyway, I am going to stop rambling now, thanks again LisaK, I am so so sorry for your loss. --Ashley